Sometimes Differences Just Don’t Matter !

I’ve been known to bribe my kids with bags full of candy if they will agree to stay home. I’m not sure when I became such a killjoy, but it definitely didn’t help when trick or treating began to involve maneuvering a wheel chair up and down dark, crowded sidewalks filled with screaming kids. It wasn’t fun for anyone in my family.

My husband would be swearing under his breath while huffing and puffing as he tried to get our son Jack’s wheelchair up stairs to people’s front doors. I would be angry and admonishing Jack’s brother and sister for their impatience, frustrated with their complaints about how slowly we were going and how they couldn’t keep up with their friends. Simultaneously, I was riddled with guilt because like them, I was feeling impatient and angry as well. And then there was Jack, who actually hates candy, startles at loud noises, can’t say trick or treat, and doesn’t like masks or costumes that make his limited movement that much more restricted. There was nothing “spooktacular” about this holiday as far as we were concerned!

About four years ago that all changed. We began designing costumes around Jack’s wheelchair rather than shoving him into a costume, that frankly, nobody could even see in his wheelchair. The first year he was a soldier and his chair a tank; the next year he was a firefighter and his chair a fire truck; last year he was a pirate and his chair the ship. This year, as a mature 9 year old, he was a DJ, and the chair his turntable. Yep, DJ Jack was in the house! It may have been the best costume yet!

The other kids always go wild over Jack’s costumes and his outfits really allow him to be included in the holiday. I might even go as far as to say that he is not just included, but in fact “immersed” in the Halloween festivities. This Halloween, as in other years, Jack led our town’s public school Halloween parade. The smile on his face as his peers huddled around him was priceless. School staff sent me videos and pictures chronicling the event. Their excitement and enthusiasm was palpable. That night, at the town Trunk or Treat I heard the same sentiments over and over: “my son/daughter can’t stop talking about how cool Jack looked in his costume”, “my son/daughter said that Jack had the best costume ever”, “mom/dad, can you ask if I can borrow Jack’s costume for next year?” For Jack, this also meant that kids had something to talk about. Not something scripted that an adult suggested as a way to be polite or inclusive, but something natural that they were all talking about anyway – their costumes. “Hey DJ Jack, what are you spinning tonight?” They weren’t asking the question because it was the “inclusive” thing to say – they really wanted to know the answer.

Our community has always been terrifically supportive, and my son Jack is fortunate to have peers and adults around him who are exceptionally kind, thoughtful, and try to be inclusive at every turn. On more than one occasion, our hearts have been warmed as Jack’s friends and their parents have gone out of their way to accommodate Jack at birthday parties and on play dates. The school and the entire community have never once been “exclusive”, purposefully leaving Jack out in any way. But any parent of a child with special needs will observe that sometimes, the attempt at inclusion only goes so far – and it is not enough to make you believe that your child is really, genuinely included. The beauty of true inclusion though, is that when it really happens, nobody feels like they are going out of their way. The connection seems effortless, even organic, like it is not just there, but in fact, inextricably part of the experience as a whole.

Believing in the idea of inclusion has always been a struggle for me. I have often wondered how Jack would ever really be a part of a group in a meaningful way. In theory, inclusion seems easy enough, but in practice, it is a far more complicated endeavor. Inclusion is not a one size fits all process. The evolution we have gone through as a family – figuring out how to include Jack in family vacations, outings, holidays, and life in general, has, at times felt like putting a square peg into a round hole. How could Jack be a part of an experience and really take something meaningful from it?

Inclusion is not about making those who are doing the including feel good. It can be a by-product, but it can’t be the goal, or the real meaning is lost. If we as a family struggle with this, what does that mean for the rest of the world? What works for us will not work for every other family whose child is in a wheelchair, has CP, or another complex disability. There is not a magical solution, and some days, it feels like there is nothing natural or organic about the process. The ways in which we parent, educate, socialize, and sometimes love our typical children can feel much more natural, and often, much easier. The truth is, “special needs” can feel more like a euphemism. After all, being disabled doesn’t feel so “special”, and let’s be honest, no parent asks for a “special” child with lots of complex needs. It can be isolating, difficult, painful, and completely not inclusive for the child and the family system as a whole.

As a community and a family, we are not always successful in the inclusion process, but some days the stars align, and our children can know the simple joy of being part of an experience just like every typical child. Not because they are the same as everyone else, but because their differences, sometimes just don’t matter. This has been my experience with Halloween.

For me, and I think for many other people, Jack’s wheelchair always serves as a concrete reminder of the barriers that stand between him and the rest of the world. On Halloween though, nobody has to pretend that his wheelchair isn’t that reminder. They don’t have to look past it to see what he can do. Instead, they can embrace it because at least on this day, his chair, and who it allows him to be is enviable, admired, and in fact what prompts his inclusion.